On January 5, Catie Barber posted on her Facebook page: “I am truly the luckiest girl in the world.” It was the day of her 28th birthday but it was not a message you’d expect from a young woman, a half marathoner, who’d been unable to work, walk across the living room of her Saugerties apartment or even think straight for much of the previous ten months. But Catie was grateful for the gradual improvements she was feeling, glimmers of hope that her miserable ordeal might one day be over.
Catie Barber has long COVID, a mysterious complex of debilitating symptoms that afflicts at least one in ten victims of COVID-19. No one knows why some patients, even young, healthy ones with no pre-existing medical conditions, experience fatigue, heart palpitations, brain fog and a myriad other symptoms for as much as three years, while others recover in two weeks.
Catie caught Covid-19 early, on March 31, 2020 on her job as a registered dietitian at an area nursing home. Married only eight months, she came home exhausted that day and skipped her usual gym visit. For the next two weeks she suffered from fatigue and headaches. She tested positive for the new virus that also sickened several of her co-workers but when they recovered, she did not.
Back on the job, Catie started a routine feeding-tube procedure and suddenly realized she didn’t know how to calculate it. This was “brain fog,” a common long COVID symptom, cognitive impairment marked by memory loss and difficulty in thinking clearly. On May 4, Catie couldn’t walk to the bathroom and her husband Dave rushed her to the ER for the first time. She was testing negative for COVID-19 and kept trying to work but was so exhausted, there were days she could only function for three hours. On June 10, she went on medical leave.
Fatigue, mental “fogginess,” cough, shortness of breath, headache, muscle weakness and joint pain are all symptoms of what Dr. Gary Rogg, an internal medicine specialist with Westchester Medical Center, calls post-Covid-19 or long haul COVID. He says it can affect major organs like lungs, heart and the brain, making a multi-disciplinary approach essential. Women tend to be impacted more than men and so far the average age is 48. Depression and anxiety are common.
By the summer of 2020, Catie was virtually paralyzed. She and her husband Dave Barber moved in with her in-laws because she needed three people to shower her. Mostly bedridden, Catie started what they called her “geriatric PT,” as the former athlete re-learned how to roll over and sit up. She cried herself to sleep most nights. Dave says it was his job “to talk her off the ledge” not by denying that things were bad but by reassuring her that they could get better.
But first they got worse. On September 28, Catie was convinced she was going to die. Her heart rate was racing at 186 beats per minute (60-80 resting heart rate is average for Catie’s age) and she was convulsing. Dave called an ambulance and she was taken to the Northern Dutchess Hospital Emergency Room, where medical personnel thought she was overdosing. In fact, Catie was having the worst of her “flares,” adrenaline surges marked by heart palpitations, nausea, diarrhea, high temperature, sweating and pallor. They are so debilitating that she didn’t recover from this one until Christmas.
Catie and Dave knew she needed specialized care that wasn’t available in the Hudson Valley. A couple of days after her frightening heart episode, they had a long-awaited appointment at Mount Sinai Hospital’s Center for Post-COVID Care in New York City. There she was diagnosed with POTS, postural orthostatic tachycardia syndrome, common in long haulers like Catie Barber. Caused by damage to the autonomic nervous system, it explains why Catie experienced a rapid increase in her heartbeat. She actually felt the diagnosis was good news. “At least, I understood what was going on. When I stand up, blood can’t get to my brain fast enough.”
“The virus has many different effects on the body. Because the virus goes everywhere after it goes to the lungs, the immune response goes everywhere as well. So part of the damage is from the virus itself, but the immune system is also doing damage to your organs,” says Dr. Zijian Chen, medical director of Mount Sinai’s Center for Post-COVID Care. “It’s collateral damage.”
Still, there wasn’t much Mount Sinai could do for Catie. She’s too young for strong heart medications. They recommended tight compression stockings to encourage blood circulation, extra salt for more blood volume and medical marijuana to stimulate her appetite, relieve pain and calm her sleep. In a wheelchair for six months, Catie relied on the invaluable support of her and Dave’s parents. They’ve cooked, cleaned, accompanied Catie to New York. Friends stepped up with a meal train and a GoFundMe account that raised $7000 to help with medical expenses.
Because Catie contracted COVID-19 at work, her medical bills are supposed to be covered by New York State’s Workers’ Compensation Board. But for reasons the Barbers have not been able to determine, most of her bills – which include three ER and other doctor visits, an ambulance ride, $7000 for a psychiatrist to deal with diagnosed PTSD, her medical marijuana and other medications, now totaling somewhere between $30,000 and $75,000, have not been paid. The Barbers have hired an attorney who has litigated and won their case in court but still, the state has not paid. The debt is another burden they are sharing.
Dr. Rogg says many long COVID sufferers don’t seek medical care at all, causing themselves lasting damage. In addition to the myriad physical symptoms — the crushing fatigue, the memory loss, the shortness of breath — the lost jobs, the missed family occasions, on top of all that, long haulers also have to deal with people who don’t believe their condition is real. That’s why Catie has shared her story with The Atlantic magazine and Good Morning America.
Dr. Rogg says patients are discouraged from visiting his Post-COVID-19 clinic because they test negative for the virus despite having symptoms. Their family and their doctors tell them they’re fine, get over it. “They are distraught,” he says, “but when we say ‘we believe you,’ there’s a sparkle in their eyes!”
No one knows for sure how long post-COVID-19 lasts but Dr. Rogg says, based on the last coronavirus, SARS-Cov-1, that spread in 2004, long haulers recovered after one and a half to three years. “People are getting better, though more slowly than we’d like. They’re having more good days than bad days.”
That’s certainly true for Catie Barber, who is now back at her job five days a week. She still comes home and collapses on the sofa a couple of nights a week and often sleeps 12 hours a night and much of every Saturday. Dave no longer has to carry her up the stairs to their one-bedroom apartment; she can walk up on her own now. On days when she’s feeling energetic, Dave takes her for a drive around northern Ulster County, where they both grew up.
This is not just a medical story or a story of a young woman regaining her optimism after 18 months of despair. It’s a love story. Catie and Dave agree that the trials of the past year and a half have made their romance more durable. They’ve already been tested in ways most marriages rarely are and they’re much closer than they would otherwise have been.
If you’re suffering from long COVID, there are now resources in the Hudson Valley: Westchester Medical Center Health Network has established a Post-COVID-19 Recovery Program at Mid-Hudson Regional Hospital in Poughkeepsie.